We hear so many amazing stories of why people took part in #EyetoEye in 2017 and 2018 is already proving to be no different. We have a brand new family taking on the four mile walk. Katie Berrill shares why she is taking on the challenge with her husband, Greg and six year old son, Harvey. They have already raised an impressive £1200 for Stargardt research and with four months to go we are sure they will be raising much more.
“On the 13th June 2017, I went for a routine eye appointment like I do every two years. During my eye exam, the optician started asking me questions that I had never been asked before; he told me he would be need to take pictures of the backs of my eyes. I sat patiently whilst I waited for these to be uploaded on to the computer,until he called me into the room and that's the moment my happy little life bubble burst. He sent me for an urgent referral at Northampton General Hospital, as he wasn't sure what the problem was and at first neither did the hospital. I waited three days to see a specialist consultant at Northampton, who told me he was almost sure it was Stargardts, but I would have to wait another three to fours months to have it confirmed by Moorfields Eye Hospital.
I will never forget that day at Northampton, being told I have a genetic eye disease at 32 - beforehand I had never even needed glasses or even noticed anything was wrong with my vision, and nobody else in my family has ever had an eye disorder. It was so scary. I had never even heard of Stargardts before. They say when you get told you are losing your vision, it is almost the same emotion as bereavement and that is how it felt.To this day I am still dealing with the grieving process. The four months between diagnosis from Northampton and seeing a Stargardts specialist at Moorfields was the most stressful and frightening time I have ever experienced, as I still didn't know what to expect.
On the 29th September 2017, my worst fears came true and Moorfields diagnosed me with Stargardts Macular Dystrophy. This is a rare progressive juvenile genetic eye disease that affects one in every 8,000 to 10,000 people. It causes vitamin A to build up over time and the cells in the macular to die. Your macular is responsible for seeing everything directly in front of you; fine detail, colour, faces and the simple things in life we all take for granted, like reading, writing and just watching tv. Direct sunlight is thought to accelerate the vitamin A build up, so the only thing people with Stargardts can currently do to protect their eyes is to wear sunglasses as much as possible when outside. At present, there is no treatment and no cure. Moorfields are working tirelessly to try and change this, with stem cell and gene therapy treatments, but without much needed funds, this can't happen.
Stargardts normally starts to show symptoms in childhood, so although it doesn't always feel like it, I am one of the lucky ones that have the late onset version and have retained good vision for now, although I can certainly notice vision I have lost since diagnosis. I just thought when I couldn't see someone's eyes, or nose when looking at them a few metres away, that this was normal as the onset has been so gradual I never questioned it. I had been to an optician regularly since I was young and had never had anything picked up on my eyes before. However, there were tell-tale signs when I think back.
It is so hard living with a progressive eye disease that you know will only get worse and having to literally watch your vision slip away without being able to do anything about it. To know that at some point in your life, you can expect to have no central vision and won't be able to drive, read and even be able to recognise your own child is very hard to live with.
It was Harvey's idea to do this walk when we heard about it, as he said it is the only way he can try and help me. I have tried so hard to stay strong and hide this from him as much as possible, but we can't always do that in life and this has affected our whole family. It has also been very difficult for my mum and husband, but they are an amazing support for and have helped me through the difficult past few months the best they can. I am also doing this for everyone else who is living with an eye disease and the amazing people I have met and spoken to with vision loss. They have helped me try to come to terms with this disease and to try and prevent others having to go through the same thing. Thank you for reading and any donation or support is greatly received and very much appreciated.
Katie, Greg and Harvey xxx”
We’re delighted to have Katie, Greg and Harvey join #TeamMoorfields next March. If you would like to join them and help fundraise to build a world beyond sight loss, sign up today: https://www.moorfieldseyecharity.org.uk/eye-eye-2018